Monday, December 22, 2008

Do you ever feel like you are part of a weird science experiment? I mean, Life does wacky things for sure, but our bodies are unbelievable organisms that are often even wackier.

As if MS isn't weird enough all by itself, I now seem to be experiencing strange, new symptoms courtesy of either my ever-bizarre body or else the lingering side effects of the Massive amounts of steroids I have recently consumed.

So to update I finished my round of Solu-medrol, 3 days worth, and a lot of my symptoms have started to slowly subside. Others are still lingering, but I am hopeful they will move along shortly. However, I seem to have accumulated a few new symptoms, notably my severe Sahara Eyes. I have heard the term "dry eyes" before. I have experienced dry eyes before, usually during allergy season, or perhaps after a night of heavy drinking...I mean, I have Heard that people experience dry eyes after heavy drinking...I wouldn't know personally about such things ;-) Anyway, we are talking Severe dry eyes. I felt as if my eyes suddenly up and decided not to produce tears. At all. Nothing. Nada. No watering when I yawned or even when I held them open to try and force them to water. Dry as, well, the Sahara desert!

This new fun started last Wednesday, so today the Ophthamologist was able to fit me in for an eye exam. Turns out I wasn't crazy. After a really weird test where they put a special piece of paper in your eye for 5 minutes to see how many tears you produce in that amount of time, the verdict: 0 Tears Produced. Seriously?!?! My eyes are actually producing NO water/tears whatsoever?? Yep, you heard right.

Zero Tears.

Oh Good Gracious.

At some point, all you can do is laugh. Or I guess you can cry. In fact, I probably Should cry. It would put some water in my stupid Sahara eyes!!!

This could all just be a side effect of the steroids I have come off of. OR it could be a side effect of any one of the 5 Million medications I am on. OR it could be some disease called Sjogren's Syndrome which is totally random plus I don't have time for any more diseases right now, thanks. So no one is exactly sure why my eyes up and decided to stop producing water, but the fact is I have got to get some moisture back in there. Turns out it can be dangerous to let severely dry eyes go without treatment. You can end up with scarred corneas or infections or some other awfulness. I have been dropping OTC (over the counter) drops in there 3-4 times an hour just to function. Otherwise I can barely keep them open for very long. But dropping eyedrops that often is really Really annoying, plus not really practical. I started a steroid eyedrop (which seems to make no sense if steroids caused this, but apparently I am wrong?). Then my doctor wants me to start using Restasis, a prescription eye drop designed to prompt the eyes to start making tears again. The bad news is that it can take a while to really start working. So in the meantime I am the Eyedropper Queen.

It is so hard to process all this new information and make the best decisions about what to do next. Every doctor has a different opinion and they are just opinions. it is my body and ultimately I have to decide what i want to do and how to deal with its many MANY quirks and shortcomings. I don't yet know if there are any downsides to Restasis, but i know that i don't want to take any more medications than I have to because they ALL come with their own host of side effects. So I rest my eyes alot and keep them closed. I put drops in, or that gel substance that feels like someone rubbed vaseline all over your eyeball. totally gross, but it actually feels pretty nice on a poor zero-tears dry eye. :-)

Oh it's a mess. But what are you gonna do?

As for me I'm gonna put on some red shoes and do my best to enjoy Christmas with my family, Old Sahara Eyes and all. :-)

Monday, December 8, 2008

Chris and I went to Shepherd Center on Friday. The ROCK STAR Tracy Walker was able to see me and she was equally unhappy that the oral steroids haven't done diddly-squat. She was also pretty unhappy that this is my third round of steroids this year. Soooo,

Short Term Plan: get a round of IV-steroids going asap. waiting on nurses to schedule me and get on over here and hook me up!

Long Term Plan: go back to Shepherd on Jan. 5th for an MRI to see what the heck is happening in my crazy brain and then reevaluate whether or not to change my maintenance (magical) injectable drugs. Perhaps the one I am one isn't jiving with my body chemistry as well as it should. Luckily there are still 3 more I can try!

The MonSter is just being extremely stubborn this go-round. Apparently it is trying to get invited to Christmas dinner or something but that is NOT going to happen because I am licking this thing before the holidays so I can actually enjoy them! I already spent Thanksgiving weekend balled up on the couch, and I ain't losing another holiday, so I will gladly let nurses stick needles in my veins for another few days if it will make the MonSter pack up its bags and move out!

Don't you just hate uninvited holiday guests??

Oh! and one last favor while I am thinking about it. After Round Two of steroids this week my body is going to be pretty immune-compromised. Not Bubble Girl compromised or anything, but more suppressed than normal. So I ask that you remember me cautiously especially if you have been sick. My body won't be able to fight off much in the way of colds and flu, etc. So no hugs and kisses if you have been coughing and sneezing! We can do air kisses from across the room. And I will try and be extra good about washing my hands and keeping the Purell close by! Thanks and will post again soon...

Thursday, December 4, 2008

This Relapse has settled in and gotten far too comfortable, to the point where I seem to be living in some strange twilight-zone-universe...

In this backwards sci-fi dimension nothing is as it seems. A stunning blonde beauty who "looks so good" is actually struggling just to stand in place while her legs wobble on top of numb feet with occasional vertigo to boot. One minute she feels very little pain, feels peaceful; the next minute she is writhing in pain that appeared out of nowhere that then disappears just as suddenly without explanation. In this strange universe, day and night do not exist. Fatigue sets in out of nowhere at lunchtime causing immense drowsiness.

Times, days, all blurred together. Did she eat breakfast? Lunch? She can't remember! The brain fog is unbelievably bad. Like swimming through molasses just to get a thought out and form it into a sentence. Her body's electrical system is on the fritz and constantly short circuiting causing strange muscle spasms, tremors, ringing ears, buzzing legs and other bizarreness. At times it feels like her entire body is shaking. Or maybe she is just really cold.She thinks her dad called. Was that today? Yesterday? Did she remember to call him back?? Damn you brain fog!!

Cabin fever sets in, she is dying to get out, and then she is too weak to walk out to the car. Back to the couch. Is there actually anything left on Tivo? One minute she is starving, the next too queasy to eat and no appetite for anything. And her sassy blonde locks are falling out by the handfuls again, courtesy of the massive amounts of steroids she has just consumed. Perhaps she should buy a wig in every color and wear them to suit her mood. Today sultry brunette! Tomorrow fiesty redhead!

Just spoke with my team at Shepherd Center to get their opinion on why, after all those steroids, I am feeling slightly worse, rather than better. They have advised me to come on in asap to talk it over and possibly send me in the good ole MRI machine. So trying to get an appt either tomorrow or Monday.

Sigh. I keep telling myself that this Twilight Zone I am living in is a temporary state of being and it will end.

Monday, December 1, 2008

It seems this "episode" has really knocked me on my...well...you know. I guess trying to go to my classes and trying to help put on a show is more taxing to my body than I was willing to admit and now I am still paying the price for it 2 weeks later. It is so hard to know what the limits are, but I am learning.

Having this disease has been an unbelievable lesson in humility. I have had to accept that there are going to be a great many things I cannot do along the way. It becomes a sort of internal struggle with my pride. It is quite surreal at times. I was so weak at points over the past week that I had trouble doing the simplest things, like tying my shoes or picking up my pills out of the pillbox or giving myself my shot. And I have to fight the urge to make excuses for myself...to somehow justify in my own mind why I need help with these things.

But it doesn't matter Why.

What matters is that I did need help.

Chris is so utterly amazing with me when these things happen. I am so stubborn and so independent that I will sit and struggle with shoelaces when my hands are obviously not working at that particular moment and I curse the shoes and curse my hands and there stands my husband nearby, watching and waiting. And I look up at him and curse my hands and shoes again. And he waits.

And then if I am really being stubborn he will calmly say,

"Caroline, is there something you would like to ask?"

And I breathe. And I tell that bothersome thing known as Pride to be quiet and I say,

"Honey, can you please help me tie this shoelace?"

and 5 seconds later we are good to go.

Obviously this does not happen every day. The past week has been exceptionally bad and I have needed more help with simple things than usual. But even if I am having a Great day/week/month the lesson is one that applies, regardless of whether a person is disabled or not:

People need help sometimes. And to get help, you have to ask for it.

Sure, sometimes you get really lucky and someone anticipates and offers help or that one special friend reads your mind and does the thing she knows you need most. But for the most part you gotta Ask for what you want or need.

That is so easy to say, and SO much harder to actually do. It takes a lot of pride-swallowing, humility and acceptance of your faults and shortcomings, be they physical, emotional or otherwise. But when you are brave enough to ask for help something amazing happens. People say yes, and they are in fact, honored that you asked. And then something even stranger happens. These little things add up and they bring you closer to people and you find yourself having deeper more meaningful relationships with those you love. And while having a day when you can't drive or can't tie your own shoelaces really sucks...knowing that there are people out there that love you enough to do those things for you...well, that's really pretty awesome. :-)